We're still awaiting final word on whether Madeleine will be released from the hospital today. She's doing find-- the doctors just wanted to discuss amongst themselves and also wanted to review some data from her monitors before releasing us. They said there is a chance that they'll ask to keep her one more night-- just for observation.
Regardless, we think that we've learned a lot about Madeleine's health issues and are hopeful that we may have figured out a breakthrough solution. Here's our thinking:
- Madeleine's largest goal is still weight gain. As she gains weight all of her other issues should resolve themselves.
- The biggest inhibitor to weight gain is Madeleine's tachypnia (fast breathing) as this burns calories. Madeleine is always tachypnic and therefore, she isn't gaining weight as effectively as possible.
- There are three potential reasons for her tachypnia: heart problems, chronic lung problems, and other factors that affect the lungs. They don't think the heart is causing any problems as the surgery correction appears to be working great. It is possible that the lungs have some prematurity problems but alone, this doesn't seem to be enough to cause her constant tachypnia. Adding further credence to this belief is that Madeleine gets medical treatment for her breathing via a nebulizer every 4-6 hours. When the treatment is administered, it is reasonable to assume that the chronic lung symptoms would be relieved for at least a short amount of time. (If you're asthmatic and you use your inhaler, it calms your breathing down-- same line of thinking applies with Madeleine.) However, Madeleine doesn't appear to get much, if any, relief from her treatments. While we can't fully rule out chronic lung problems, it is increasingly likely to suspect other factors affecting the lungs. In Madeleine's case, it is entirely possible if not probable that her reflux is causing fluid to irritate the opening to her lungs. Additionally, the doctors believe that Madeleine has "micro-aspirations" that have leached into her lungs-- the likely culprits of her current bout with pneumonia.
So-- what does this all mean? Well, it means that it is possible that if we solve her reflux problems, her tachypnia will subside and she'll likely put on weight much faster. In other words, solving the reflux is potentially the way to break out of the vicious cycle of health issues she's fighting and could puth er on a fast track for growth.
Here's the current plan for solving the reflux:
- During the day, we are going to feed her three times: at 11AM, 2PM, and 5PM. We are going to give her a bottle for feeding and will let her take as much as she can for 30 minutes. At 8PM, we are going to add up the totals from the three feeds and then substract this amount from her full day amount of 490 cc's. We'll then add this remaining amount into a bag and will hook the bag up to a pump that will slowly feed Madeleine the remaining formula over a 12 hour period. By taking this approach and maintaining her dosages of prevasid and reglan, we're hoping to minimize the frequency and incidents of reflux. This is the approach we've taken for a day in the hospital and it already appears to be helping Madeleine's breathing relax. Its still too early to draw any significant conclusions but we're pretty hopeful.
In any case, that's pretty much everything for us. I'll report back once Madeleine gets released and will let you know how she's doing with this new feeding approach. We're going to have a low key weekend at home-- hoping that by taking it slower, Madeleine can benefit as well. Kirsten and I don't do a slow life pace very well-- we're hoping it isn't necessary for too long.
Take care,
Brent
Friday, August 8, 2008
Thursday, August 7, 2008
Likely to be Released Tomorrow
Madeleine is still doing well and the doctors simply want to observe her for another night before releasing her. The medical plan laid out in the previous post is still valid. That's all for now-- hope to report further good news tomorrow. Take care,
Brent
Brent
Continued Progress
Madeleine had another good night in the hospital and we believe that we're getting closer to being discharged-- we'll know more early this afternoon as the doctors wanted to discuss her case on rounds to ensure full agreement on her medical plan. Kirsten and I believe the plan will be as follows:
1) Discharge: Madeleine will likely be released tomorrow-- allowing them another day to monitor her recovery from the pneumonia and for her to be fully weaned from the short term steroids that she has received in the hospital. She will continue on antibiotics for another week or so.
2) Feeding: We'll likely go home with a pump that we'll use to feed Madeleine throughout the night. Rather than feeding every three hours, we'll set it up to feed her small amounts of food on a constant basis. During the day, we'll feed her some via bottle but we won't push her. Our rationale is that we think she is refluxing after eating and her current pneumonia was potentially caused by "microaspirations" in the lungs. We need to conduct a sleep study to learn more about Madeleine's reflux and how best to treat it.
3) Sleep study: We'll schedule the sleep study for a few weeks from now. It would be nice to schedule it sooner but given Madeleine's infection, they don't think they'll get an accurate read on her long-term reflux issues.
That's about it for right now. We feel like we've made a little progress-- albeit very slow-- and we're hopeful that this medical plan will allow Madeleine to better control her reflux thereby enabling her growth. Thanks again for everyone's support.
Brent and Kirsten
1) Discharge: Madeleine will likely be released tomorrow-- allowing them another day to monitor her recovery from the pneumonia and for her to be fully weaned from the short term steroids that she has received in the hospital. She will continue on antibiotics for another week or so.
2) Feeding: We'll likely go home with a pump that we'll use to feed Madeleine throughout the night. Rather than feeding every three hours, we'll set it up to feed her small amounts of food on a constant basis. During the day, we'll feed her some via bottle but we won't push her. Our rationale is that we think she is refluxing after eating and her current pneumonia was potentially caused by "microaspirations" in the lungs. We need to conduct a sleep study to learn more about Madeleine's reflux and how best to treat it.
3) Sleep study: We'll schedule the sleep study for a few weeks from now. It would be nice to schedule it sooner but given Madeleine's infection, they don't think they'll get an accurate read on her long-term reflux issues.
That's about it for right now. We feel like we've made a little progress-- albeit very slow-- and we're hopeful that this medical plan will allow Madeleine to better control her reflux thereby enabling her growth. Thanks again for everyone's support.
Brent and Kirsten
Wednesday, August 6, 2008
Some Improvement
I spoke with Kirsten and she has some good news to report from the hospital: it looks like the infection is under control. Madeleine has been weaned off the additional oxygen support that she received yesterday and is back to the home settings of .5 liters of oxygen. She is still receiving additional support via IV steroids and the doctors haven't determined how they want to wean. Still, they are encouraged that she's responded so positively to the antibiotics.
This is our current plan:
1) We're planning on being in the hospital for at least a few more days. While the infection is in retreat, any lung infection is potentially serious so we need to play it safe. We'll continue with the current regimen of antibiotics until/unless a the blood or mucus cultures grow something that requires a change.
2) We'll continue with the continuous feeds via a pump as this approach seems to limit Madeleine's reflux.
3) We're unsure when the sleep study will be scheduled. There is some thought that the sleep study may be unnecessary as the change in feeding could be a short-term solution for Madeleine's reflux. Kirsten and I think that the feeding change is a good one but we also think that the sleep study is necessary and could shed further light on the situation. Kirsten is planning on speaking further with the attending doctor about this issue.
That's all for now. We're hoping that the major drama has passed and that we're on the road to recovery. Thanks,
Brent
This is our current plan:
1) We're planning on being in the hospital for at least a few more days. While the infection is in retreat, any lung infection is potentially serious so we need to play it safe. We'll continue with the current regimen of antibiotics until/unless a the blood or mucus cultures grow something that requires a change.
2) We'll continue with the continuous feeds via a pump as this approach seems to limit Madeleine's reflux.
3) We're unsure when the sleep study will be scheduled. There is some thought that the sleep study may be unnecessary as the change in feeding could be a short-term solution for Madeleine's reflux. Kirsten and I think that the feeding change is a good one but we also think that the sleep study is necessary and could shed further light on the situation. Kirsten is planning on speaking further with the attending doctor about this issue.
That's all for now. We're hoping that the major drama has passed and that we're on the road to recovery. Thanks,
Brent
An Additional Complication
The doctors ordered a chest X-Ray yesterday as part of the standard baselining done when a patient is admitted. The results came back last evening demonstrating that Madeleine is fighting an infection in her lungs. The infection doesn't appear to be major-- no one can hear anything in her lungs and they've started her on a round of general antibiotics. They've also taken blood and mucus cultures and hope that these cultures will allow them to determine the specific infection that they are fighting. If it is bacterial, they will adjust the antibiotics she's on if necessary to target the bug. If its viral, they're not able to treat with antibiotics and we'll likely just monitor the infection.
This is definitely a downturn for Madeleine and we're simply hopeful that they caught it early and she's able to rebound quickly. The good news is that so far, she's shown no further signs of infection: She is alert and looks good, she does not have a fever, and other than reliance on a higher amount of oxygen, she is not displaying any other signs of infection. The doctors did wean her a bit this morning from 2 liters to 1.5 liters and they'll monitor Madeleine's status before weaning further.
Assuming that the infection is under control and dissipates in the next few days, the remaining question is when it makes sense to schedule Madeleine's sleep study. We all still agree that it is likely that Madeleine struggles with blocked apnea resulting in bradycardia episodes but a sleep study may not be useful when Madeleine is on a higher flow of oxygen. After all, the oxygen flow may be a solution to the blockage so they may not diagnose any blockage if they conduct the sleep study while she's on a higher flow. Madeleine is reliant on the higher flow right now so it isn't possible for them to simply drop the flow for the study. Kirsten is at the hospital today and she's going to talk with the doctors about the timeframe and approach for treating the infection while also determining a plan for conducting the sleep study.
That's all for now. I'll provide further updates regarding the medical plan and any other changes in Madeleine's condition. Thanks again for your interest and support.
Brent
This is definitely a downturn for Madeleine and we're simply hopeful that they caught it early and she's able to rebound quickly. The good news is that so far, she's shown no further signs of infection: She is alert and looks good, she does not have a fever, and other than reliance on a higher amount of oxygen, she is not displaying any other signs of infection. The doctors did wean her a bit this morning from 2 liters to 1.5 liters and they'll monitor Madeleine's status before weaning further.
Assuming that the infection is under control and dissipates in the next few days, the remaining question is when it makes sense to schedule Madeleine's sleep study. We all still agree that it is likely that Madeleine struggles with blocked apnea resulting in bradycardia episodes but a sleep study may not be useful when Madeleine is on a higher flow of oxygen. After all, the oxygen flow may be a solution to the blockage so they may not diagnose any blockage if they conduct the sleep study while she's on a higher flow. Madeleine is reliant on the higher flow right now so it isn't possible for them to simply drop the flow for the study. Kirsten is at the hospital today and she's going to talk with the doctors about the timeframe and approach for treating the infection while also determining a plan for conducting the sleep study.
That's all for now. I'll provide further updates regarding the medical plan and any other changes in Madeleine's condition. Thanks again for your interest and support.
Brent
Tuesday, August 5, 2008
Bittersweet News
Before getting to the medical updates, make sure to check out the picasa site for pictures of Madeleine and the Bushey clan taken at her open house. We hired a photographer and there are tons of pictures. See the link at the top of the page and look for the folder entitled "July Party for Madeleine."
Okay, with that out of the way, here's the skinny on Madeleine. Kirsten and I took her to the hospital today for a check up with the pulmonary office and after much debate and discussion, we mutually agreed to admit her to the hospital. We're obviously disappointed that she's back in the hospital but we're also hopeful as we think we're getting closer to getting a grasp on all of her challenges. Here are the specific plans and reasoning for re-admitting her:
1) Determining cause and solution for bradycardia and tachypnia: Despite some limited progress, Madeleine continues to struggle with bradycardia (low heart rate) episodes and is also constantly tachypnic (she breathes too fast). Together, these issues pose some serious consequences: its never good when your heart rate drops and when she breathes too fast, she burns calories, thereby limiting her ability to gain weight. We talked at length about the cause of the bradycardia and tachypnia and all agreed that the primary culprit is reflux (i.e., food coming back up out of her stomach.) The unanswered question is why this is occuring. There are three possible problems: she has trouble swallowing, she has trouble processing food (slow motility), or something is pulling the food back up. The swallow issue is most dangerous as this can lead to aspiration of milk into the lungs and thankfully, the swallow study done a few weeks ago indicates that this isn't an issue. Furthermore, the milk scan done a few weeks ago shows that her motility is good indicating that food isn't sitting in her stomach too long. Therefore, it is likely that something is causing the food to come back up and the test that is needed to confirm this issue is a sleep test. Our nurse practitioner is fairly certain that Madeleine has an obstructed breathing passage and when it becomes obstructed, it creates a pocket of negative pressure, thereby pulling food up out of the stomach, causing her to cough and possibly block her breathing passage and causing bradycardia episodes. Additionally, since this food comes up with stomach fluid and it burns the esophagus causing pain and increased breathing. (As an example, think about when you burp and stuff comes up-- it hurts.) The sleep test will do three things: First, it will confrim that Madeleine does indeed have a blockage. Second, it will then determine the cause/location of the blockage. Its likely that the combination of her feeding tube and low muscle tone of the esophagus is causing the blockage. Finally, the sleep study will allow them to test out different solutions for the blockage. The two likely solutions are increased oxygen flow or increased flow via vapotherm, a high flow nasal canula that would blow room air that is very humid.
This may seem like a lot of information but it is actually very hopeful and helpful for Kirsten and I as we finally think we've found the cause and potential solution to the reflux challenges that Madeleine is struggling with. We're hopeful that the sleep test will be scheduled in one of the next few nights and we will provide the results as soon as they are available. Assuming we end up with increasing the oxygen and/or using the vapo-therm, the expectation is that as Madeleine grows, the muscles surrounding her esophagus will develop further and coupled with her overall growth, the incidence of reflux will greatly decrease, thereby allowing them to wean Madeleine. If this turns out to be the approach, its likely that Madeleine will be on an increased flow for at least a few months.
2) Test out alternative feeding plan: Given the number of bradycardia episodes and the belief that reflux is the culprit, the doctors want to put Madeleine on a continuous feeding pump that will replace bottle feeding in the short term. The thinking behind this approach is that a slow drip of food into the stomach will limit the volume of food in her stomach at any given time thereby decreasing the severity of any reflux episodes. Since any feeding change can pose challenges, the doctors would prefer to monitor Madeleine in the hospital for a few days.
3) Address oxygen saturation concerns: Madeleine was having a little difficulty keeping her saturation levels up. The doctors believe that the combination of her tachypnia and bradycardia events is the culprit and they think that the solution identified via the sleep study should help resolve this issue. Still, they want to resolve the issue sooner and expect to give her a steroid while she's in the hospital. They also will increase her nebulizer (breathing medicine) to every four hours just to make sure that her lungs are as open as possible.
4) Consult with a GI specialist: The doctors were convinced that once the isses listed above are addressed, we'll see a marked improvement with Madeleine. That being said, they agreed with us that it makes sense to work in consult with a GI specialist to ensure that our approach in feeding Madeleine makes sense and that they're doing everything they can to control the reflux.
Madeleine's time in the hospital shouldn't be too long: we're hoping that she is out by Friday and there is a silver lining in all of these details: Despite breathing too hard and having lots of trouble with bradycardia and reflux, Madeleine is still gaining weight: she weighed in at 7 lbs 4 oz. Assuming we can get the breathing and bradycardia episodes under control, it is entirely realistic that Madeleine's growth will take off.
That's all for now. We'll keep everyone informed as we learn more. We fully expect to report much better news in the coming days and weeks. Take care,
Brent
Okay, with that out of the way, here's the skinny on Madeleine. Kirsten and I took her to the hospital today for a check up with the pulmonary office and after much debate and discussion, we mutually agreed to admit her to the hospital. We're obviously disappointed that she's back in the hospital but we're also hopeful as we think we're getting closer to getting a grasp on all of her challenges. Here are the specific plans and reasoning for re-admitting her:
1) Determining cause and solution for bradycardia and tachypnia: Despite some limited progress, Madeleine continues to struggle with bradycardia (low heart rate) episodes and is also constantly tachypnic (she breathes too fast). Together, these issues pose some serious consequences: its never good when your heart rate drops and when she breathes too fast, she burns calories, thereby limiting her ability to gain weight. We talked at length about the cause of the bradycardia and tachypnia and all agreed that the primary culprit is reflux (i.e., food coming back up out of her stomach.) The unanswered question is why this is occuring. There are three possible problems: she has trouble swallowing, she has trouble processing food (slow motility), or something is pulling the food back up. The swallow issue is most dangerous as this can lead to aspiration of milk into the lungs and thankfully, the swallow study done a few weeks ago indicates that this isn't an issue. Furthermore, the milk scan done a few weeks ago shows that her motility is good indicating that food isn't sitting in her stomach too long. Therefore, it is likely that something is causing the food to come back up and the test that is needed to confirm this issue is a sleep test. Our nurse practitioner is fairly certain that Madeleine has an obstructed breathing passage and when it becomes obstructed, it creates a pocket of negative pressure, thereby pulling food up out of the stomach, causing her to cough and possibly block her breathing passage and causing bradycardia episodes. Additionally, since this food comes up with stomach fluid and it burns the esophagus causing pain and increased breathing. (As an example, think about when you burp and stuff comes up-- it hurts.) The sleep test will do three things: First, it will confrim that Madeleine does indeed have a blockage. Second, it will then determine the cause/location of the blockage. Its likely that the combination of her feeding tube and low muscle tone of the esophagus is causing the blockage. Finally, the sleep study will allow them to test out different solutions for the blockage. The two likely solutions are increased oxygen flow or increased flow via vapotherm, a high flow nasal canula that would blow room air that is very humid.
This may seem like a lot of information but it is actually very hopeful and helpful for Kirsten and I as we finally think we've found the cause and potential solution to the reflux challenges that Madeleine is struggling with. We're hopeful that the sleep test will be scheduled in one of the next few nights and we will provide the results as soon as they are available. Assuming we end up with increasing the oxygen and/or using the vapo-therm, the expectation is that as Madeleine grows, the muscles surrounding her esophagus will develop further and coupled with her overall growth, the incidence of reflux will greatly decrease, thereby allowing them to wean Madeleine. If this turns out to be the approach, its likely that Madeleine will be on an increased flow for at least a few months.
2) Test out alternative feeding plan: Given the number of bradycardia episodes and the belief that reflux is the culprit, the doctors want to put Madeleine on a continuous feeding pump that will replace bottle feeding in the short term. The thinking behind this approach is that a slow drip of food into the stomach will limit the volume of food in her stomach at any given time thereby decreasing the severity of any reflux episodes. Since any feeding change can pose challenges, the doctors would prefer to monitor Madeleine in the hospital for a few days.
3) Address oxygen saturation concerns: Madeleine was having a little difficulty keeping her saturation levels up. The doctors believe that the combination of her tachypnia and bradycardia events is the culprit and they think that the solution identified via the sleep study should help resolve this issue. Still, they want to resolve the issue sooner and expect to give her a steroid while she's in the hospital. They also will increase her nebulizer (breathing medicine) to every four hours just to make sure that her lungs are as open as possible.
4) Consult with a GI specialist: The doctors were convinced that once the isses listed above are addressed, we'll see a marked improvement with Madeleine. That being said, they agreed with us that it makes sense to work in consult with a GI specialist to ensure that our approach in feeding Madeleine makes sense and that they're doing everything they can to control the reflux.
Madeleine's time in the hospital shouldn't be too long: we're hoping that she is out by Friday and there is a silver lining in all of these details: Despite breathing too hard and having lots of trouble with bradycardia and reflux, Madeleine is still gaining weight: she weighed in at 7 lbs 4 oz. Assuming we can get the breathing and bradycardia episodes under control, it is entirely realistic that Madeleine's growth will take off.
That's all for now. We'll keep everyone informed as we learn more. We fully expect to report much better news in the coming days and weeks. Take care,
Brent
Friday, August 1, 2008
Making Great Strides in Michigan
I apologize for the long break in posts-- we've been busy visiting family in Michigan and I just haven't made time to type. However, I've posted some pictures of Madeleine today-- see the July album. We'll post additional pictures on Sunday or early next week-- I don't have the disk with me right now and the internet connection at my parent's condo isn't very fast.
As you can probably see from some of the photos, Madeleine continues to progress and we feel like she's making major progress. Our primary focus remains on her weight gain and we think she's starting to take off. On this past Monday, we took her to the hospital in Flint (our friend Kelly is a NICU nurse at Hurley Hospital) to weigh her and she was up to 6 lbs 14 oz. Based on her previous weight when she was last admitted to the hospital (6 lbs 4 oz), she had put on over 1/2 ounce/day. Our goal is to get her to gain up to 1 oz per day, so we're fairly pleased with the progress. Since weighing her, Kirsten and I are convinced that she has continued to grow-- we don't have any empirical evidence as we haven't weighed her again but she just looks bigger and her clothes are fitting tighter.
In addition to getting bigger, Madeleine is much more alert and has improved her muscle coordination a great deal in the past two weeks. I was away for four days on a baseball trip and I was amazed by Madeleine's progress in that short timeframe. Before I left, she didn't really react to outside stimuli but now she is reaching out for toys, she is reacting when the dogs walk by, and she has even followed a Baby Einstein show that Kirsten and my mom purchased. In short, she's making great progress and we couldn't be happier.
Next week promises to be a big week for Madeleine. She has a follow-up appointment with the pulmonologist and they will download data from her apnea monitor. We have had some bradycardia events (low heartrate) and we're interested to get the pulmonologist's reaction. The episodes have greatly decreased in frequency and duration and we're hopeful that the data will agree with our belief that Madeleine is slowly resolving this issue. Kirsten and Madeleine will also continue working with home nursing care as well as with physical and occupational therapists as we continue to push Madeleine's development as we push her to gain weight. IN short-- we feel like we're on the road to recovery and hope that we can begin making up ground.
In terms of future goals, we've backed off our timeframes on resolving Madeleine's medical issues. We're still confident that Madeleine will overcome all of her medical challenges including: reflux, bradycardia, dependence on oxygen, and her ileostomy. Instead of placing aggressive goals, we've just said that we hope to get her instestines reattached some time this fall (shooting for October) and we hope that by the New Year, she is "cord free" meaning she'll be off of oxygen support, will be feeding on her own, and will no longer need the apnea monitor. The important factor is that all of her major medical issues should be resolved-- we're just going to need a bit more patience.
That's all for now. Again-- I will post a ton more pictures in the next few days. Thanks again for everyone's support and interest.
As you can probably see from some of the photos, Madeleine continues to progress and we feel like she's making major progress. Our primary focus remains on her weight gain and we think she's starting to take off. On this past Monday, we took her to the hospital in Flint (our friend Kelly is a NICU nurse at Hurley Hospital) to weigh her and she was up to 6 lbs 14 oz. Based on her previous weight when she was last admitted to the hospital (6 lbs 4 oz), she had put on over 1/2 ounce/day. Our goal is to get her to gain up to 1 oz per day, so we're fairly pleased with the progress. Since weighing her, Kirsten and I are convinced that she has continued to grow-- we don't have any empirical evidence as we haven't weighed her again but she just looks bigger and her clothes are fitting tighter.
In addition to getting bigger, Madeleine is much more alert and has improved her muscle coordination a great deal in the past two weeks. I was away for four days on a baseball trip and I was amazed by Madeleine's progress in that short timeframe. Before I left, she didn't really react to outside stimuli but now she is reaching out for toys, she is reacting when the dogs walk by, and she has even followed a Baby Einstein show that Kirsten and my mom purchased. In short, she's making great progress and we couldn't be happier.
Next week promises to be a big week for Madeleine. She has a follow-up appointment with the pulmonologist and they will download data from her apnea monitor. We have had some bradycardia events (low heartrate) and we're interested to get the pulmonologist's reaction. The episodes have greatly decreased in frequency and duration and we're hopeful that the data will agree with our belief that Madeleine is slowly resolving this issue. Kirsten and Madeleine will also continue working with home nursing care as well as with physical and occupational therapists as we continue to push Madeleine's development as we push her to gain weight. IN short-- we feel like we're on the road to recovery and hope that we can begin making up ground.
In terms of future goals, we've backed off our timeframes on resolving Madeleine's medical issues. We're still confident that Madeleine will overcome all of her medical challenges including: reflux, bradycardia, dependence on oxygen, and her ileostomy. Instead of placing aggressive goals, we've just said that we hope to get her instestines reattached some time this fall (shooting for October) and we hope that by the New Year, she is "cord free" meaning she'll be off of oxygen support, will be feeding on her own, and will no longer need the apnea monitor. The important factor is that all of her major medical issues should be resolved-- we're just going to need a bit more patience.
That's all for now. Again-- I will post a ton more pictures in the next few days. Thanks again for everyone's support and interest.
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